Inspiring, Uplifting and Informative INNERviews
YVONNE PIERRE: Melody, could you take a moment to introduce yourself to the HYH readers?
MELODY BOGAN: My name is Melody Bogan and share my life with my loving husband, Carl, and our 3 ‘crumb snatchers’, Carl “Allan” (5), Vivian (3), and Samantha (21 mo). We are a family devoted to Christ in our faith and both work outside the home. After having my son born with Ds, life led me into a different path that I love. I am employed with a company that helps to take the confusion out of healthcare for our consumers. Walking this road with Ds there is so much information to digest and health insurance has been a hostile sea to navigate.
YVONNE: When and how did you learn Allan had Down syndrome?
MELODY: Allan was born at 37 wks, 1 day gestation. I’d had a threatened miscarriage in my 10th week of pregnancy. All of my diagnostic blood work and ultrasounds did not detect anything that would be indicative of Ds. At his birth he presented with hypoglycemia (extremely low blood sugar) and some respiratory distress and was taken to the NICU. While in the NICU, a resident noticed phenotypic features reminiscent of Ds. To this day I am not happy with the way the doctors handled themselves in presenting the news to us. I recall the attending physician saying to us “By the way, did anyone speak to you concerning the genetic testing we sent off?” I was floored after he and a resident kept insisting we were told shortly after his birth. This was not true and the fact they maintained that stance was disconcerting. Also, we felt simply overwhelmed as to us they were talking about a ‘condition’ and all we wanted was to enjoy our son. He was our flesh and blood and not the latest science study.
YVONNE: How much did you know about Down syndrome prior to his birth?
MELODY: Perhaps a great deal of my disdain stems from the fact that I graduated with my Masters of Science in the Animal/Biological Sciences, with an emphasis in Reproductive Biology. I knew quite well about genetics and Down syndrome, so to be talked to as if I were ‘ignorant’ was intolerable. After realizing my background and education, the doctors changed their tune with me and my husband immediately. Of course upon having his karotype confirm the diagnosis, I dove into as much information I could gather. Something about taking ownership and seeking understanding helped us get a better footing with our journey forward.
YVONNE: What was your initial reaction and how have it changed?
MELODY: Our initial reaction was naturally shock, but what was undeniable was our pure love for Allan. I’d give anything to have a better birth experience to simply hold him and not have the fuss and all the scientific talks about his condition. We cried a lot and grieved the life he would have as a typical needs boy. We too were scared, but relied heavily, as we still do, on our faith and our God. We realized this was bigger than us and He chose Allan for us. I was in love with him from the start. Looking back, I am starting to see how much Allan has saved my life from mediocrity. I live, walk, breathe in purpose. I’m working in a profession to help people navigate through confusing insurance matters. Allan has brought joy to our home that cannot be squelched. He is loving, kind, generous and a complete ham.
YVONNE: You recently wrote a very heartfelt and uplifting blog post called, “Incredible Praise: Lesson from Allan to Mommy” on your blog “herStOREical THUMB.” What inspired this post?
MELODY: People, especially family and friends are very supportive of us and have truly been the village we need for our children. I love to share our experience on our journey with Ds. Plus, it’s my testimony; my acknowledgement of what God is teaching me through my son. Allan has endured some setbacks with his health and development. To see what he’s come through and witnessing him standing independently was a beautiful reminder of how far he’s come. I was so moved by the experience and simply had to share.
YVONNE: What is one of the most profound lessons you’ve learned from Allan?
MELODY: Allan teaches me daily on how to love despite; how to rejoice and shine your light despite. He’s faced death several times with serious health bouts, and yet he still smiles and laughs from his belly. From Allan, I see love given unconditionally. He is a friend to anyone he meets.
YVONNE: What message would you like to send to new parents?
MELODY: Don’t dismiss the pain and disappointment. Allow yourself to feel the initial grief and give dignity to your pain. It’s real and there’s nothing to be ashamed of. When you’ve reached a place where you can ‘breathe’, set in your heart that this child who’s been given to you is a treasure and they will bring more joy than you can imagine. Surround yourself with others who are farther up the road and glean as much as you can.
YVONNE: What has been your biggest challenge?
MELODY: To this very day, we are overwhelmed with medical bills and walking through the trail of paperwork and waivers. We have been told conflicting information and are struggling to get good help. Life is busy for us; working fulltime and raising 3 kids leaves little time to fill this document out; go to this vs. that appointment. We are simply lost and would give anything to have an advocate who can make this simplified for us. How ironic I do this for people with their health insurance, but can’t find someone to love us through the disability paperwork. I get depressed about this; this is truly the most difficult part of our walk and something tells me it doesn’t have to be, but I don’t know where to start.
YVONNE: If you had the power to change one thing in the future for individuals with Down syndrome what would it be and why?
MELODY: Once I learn to navigate my way through the paperwork, I’d love to have a team of volunteers who can go to the homes of new parents blessed with the loving souls with 47 chromosomes and be an advocate. They are trying to learn all about Ds, take care of a newborn and all the stuff that comes along with it. I’d set their mind at ease and make sure to help them with filling out paperwork, answering their questions and making sure things were mailed properly. I’d then follow up with the agencies the paperwork was forwarded to ensuring they were received and a case was open for that child.
MELODY: Thank you for this opportunity. Please keep me in mind for similar efforts. I don’t mind sharing Allan’s story or my own as his mom. It’s been a rich journey.